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I was wondering if anyone knew who I could appeal to on the state or even federal level if my ASO is planning on dropping me from ADAP. They say that since I have low cost insurance (which only covers about 10% of my Rx bill) that I am no longer eligible for ADAP. That means I have to come up with $2000 a month! I only make $800 a month! My state currently has no one on the ADAP waiting list so I don't know why they are doing this. I live in Alabama.

Hi Sam...It may be worth it to contact an attorney who will hold off charging you until your case is resolved if your ASO doesn't step to bat for you. Call a state senator or house rep and let them know your situation...Keep us posted.

Jody

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"Wake up to find out that you are the eyes of the world". "Try to discover that you are the song that the morning brings."

I know in the state of TN if you even have minuscule access to health insurance you lose ADAP coverage. I have to verify every time I renew ADAP that where I work does not offer health insurance. The rules and regulations can sometimes cause more stress than the damn disease.

Are there any other aids organizations in the state you can call? Your salary might qualify you for drug assistance directly through the drug companies. Any gay organizations that might be able to provide some answers? Federal and state budgets being what they are it can sometimes feel hopless. I have learned the squeaky wheel usually gets the grease...so keep calling and calling and calling. I know it is frustrating and frankly at times frightening, but it can be done. I have also found if you can, it is better to talk to someone in person...schmooze if you have to. Right down and verify everything, including the names of the folks you talk to.

Hopefully Mark (Aztecan) will be able to offer you his expertise. I won't patronize you by offering false hope...bottom line you must find out exactly what resources you are entitled to in 'bama and then make your decisions. Informed decisions can be made with a little research. I wish you the best of luck.

Hey Sam,Unfortunately, having bad insurance is often worse than having no insurance. Is your insurance from your employer or is it some sort of private insurance? Is there a way to drop this insurance and stay on the ADAP rolls?

When I ran across this type of situation, I contacted the person at the state capitol who approved, enrolled and renewed people on ADAP. I explained the situation, insurance much like yours which was basically useless, and managed to talk her into allowing the person to drop his insurance and enroll in ADAP.

I explained that not allowing the person to continue with ADAP would probably result in his stopping treatment and, in the long run, cost the state a lot of money through hospitalization, etc.

But that was a one-case scenario and I don't know if it will work again because a new person is now heading that agency.

Your case manager should do/have done this for you. If he/she is unwilling to do this, you should call the state ADAP director yourself and explain what is going on. It is at least worth a shot.

Here in New Mexico, it is now next to impossible to get on ADAP directly.

People now must enroll in the Medical Insurance Pool, which gives the person full insurance coverage (Blue Cross-Blue Shield) plus still provides direct mailing of meds from the state with no copay, basically the same as ADAP used to do.

Our ASO pays the premiums, Ryan White pays the deductible, but the insured individual does have an annual copay to meet which comes into play with doctor visits, any hospitalization or when obtaining non-HIV meds at local pharmacies. In other words, it is just like most insurances.

Is there anything like that available in Alabama? If so, could you drop the low-cost, ineffective insurance for the state plan? There are ways to plead your case for this, such as the example of later, more expensive treatment if meds aren't accessible. That might also be an option.

I wish I had better answers for you. I don't know anything about how Alabama manages its services so none of this may be helpful.

Another idea might be to go through MedBank or another program where the drug manufacturer provides the medication to you as a "public benefit." A word of warning, drug manufacturers often change the formulary they use on these plans and I don't know if any of the HIV meds are still available through these plans.

Alan (Alanbama) may have a better handle on how things work in your state. Perhaps he knows of some avenues you might explore.

I cant really help but your lab stats look like you were aids at the beginning. Could you go on SS disability?(Just a shot in the dark)I just hate the U.S. insurance system. The worse in the civilized world!Its all based on ones employment, and employers have no obligation to step up to the plate and give decent coverage.Just a bad system. Sure hope a solution comes along soon for your. You shouldnt (no one should) have to go thru this.

I was wondering if anyone knew who I could appeal to on the state or even federal level if my ASO is planning on dropping me from ADAP. They say that since I have low cost insurance (which only covers about 10% of my Rx bill) that I am no longer eligible for ADAP. That means I have to come up with $2000 a month! I only make $800 a month! My state currently has no one on the ADAP waiting list so I don't know why they are doing this. I live in Alabama.

Sorry to hear about the mess, Sam. In fairness to ADAP programs (which was not true in NY but seems to be true in MA) those who run the programs in each state usually do not have enough funds to cover all takers, so they are forced to force you/us to try anything other than ADAP first and only if you/we fail, get a letter of rejection, will they let you/us in. Even though there is no one on a waiting list, the people running your state's program have to protect their funds so that this status remains a constant: no one without insurance will be denied A.D.A.P. coverage.

The first thing that I would do is stockpile drugs now. You will know whom to contact to see how much 'extra' you can plead for (and for what reasons). There may or may not be a disruption if you have to switch programs and the first thing that someone on drugs needs to do is to prevent missed doses. The second thing I would do is to try to unravel the relationship between your A.S.O. and ADAP, what the rules of A.D.A.P. are in your state. I agree with Mark, that having some insurance is worse than no insurance because it can, as it seems to be doing quite nicely, knock you out of the coverage which you need. If it is clear that your particular coverage does lock you out of A.D.A.P., you then have to sit down, perhaps with a case manager/social worker and think through your options.

So, options, as third: 1) current job/no insurance; 2) new job (for better insurance coverage or more pay); 3) new job for no insurance (and so you are back with A.D.A.P. (I hope there are more options than I can come up with here.)

Yes, you can contact state/federal officials, but this approach will only work if you can see clearly and so can show them clearly what the problem is and, more importantly, what the solution is which they can deliver for you and why it is in their interest to do so. This is why I brought up the above. Know what solutions they might suggest so that you are clear in your argument for why they don't work. Win

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Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems. The last was published in December 2006. He has a work-in-progress underway titled Starting Positions.

Thanks everybody, for your help. I will definitely look into your suggestions. I did a bit of digging myself (instead of sleeping) and found out I don't need to panic; they can't "discontinue" me until the deadline, March 31. I have two months to get my ducks in a row.

Thanks again, I will look into your links and other programs you all mentioned. "What a difference a day makes"Love,Sam

Yeah I went through that last year and finally after a year of panic stress and heartache ended up spending the last of my savings so that I would become eligible for Medicaid Spend Down coverage and became Duel Eligible this year with my Medicare Part D Plan.

This makes my My drugs cost $3 per month per prescription but I had to practically throw myself off a Cliff to get to this point. Call EVERYONE! Talk to their bosses and their bosses bosses til someone gives you a straight answer. That's what I had to to do.

It looks like right now that one of the following three things will happen:

1. mail order Rx company my ASO told me about (I can't remember the name) will negotiate with my insurance company (Blue Cross Blue Shield of AL) for reasonable co-pays (reasonable for me would be total of less than $100 for ALL my meds; I can't afford any more than that).

2. Partnership for Prescription Assistance or whatever it's called (the one Montel pushes), will get me my meds for free.

3. If neither of the above happen, or if I still can't afford the co-pays, I will drop my health insurance in order to get back on ADAP.

Those look like my only options. My state doesn't have "Medically Needy Medicaid" that would give assistance to those whose meds cost more than their income. If anyone knows better please tell me about such a program in Alabama.

The mail order Rx company is medexpresspharmacy.com, or 1800medexpress.com (same company). Hopefully they will cover the part that my insurance doesn't cover. I'm just waiting on their reply after I filled out a bunch of paperwork.

As long as the playing field was even I think universal health care is a good idea. I think anyone who is able to would be willing to put some of their pay towards that. I don't think that will happen for a while, though. There is too much money to be made by the big drug companies.

Sam,Please keep the group informed on your progress and you have been doing. It would seem logical to drop BCBS in order to gain ful ADAP coverage (if I am correct) or is there a catch? Is your current employer offering BCBS? Did you take the richest program (the most expensive) or the stripped down version? Did you just choose BCBS this past open enrollent?

I know alot of questions, but I need more info. What is BCBS giving you that you did not have prior to having this insurance?

I've had stripped down bcbs insurance for over a year; my aso just figured it out (ss# and computer). The only thing I have with insurance is the hope that if I needed emergency hospital service they wouldn't let me bleed to death because of no insurance.

Other than that, I don't get any benefit since I've had it. My other doctor and dentist visits are cheap anyway, so my insurance doesn't pay much until I reach a certain amount of out of pocket expense, which never happens then the year starts over.

I'm over it. If this company my aso hooked me up with doesn't pay my co pay for my meds, I'm cancelling my insurance and go back on ADAP.

I really appreciate all your concern; I don't know what I would have done without your support. I don't know ANYone here with hiv so the staff at my ASO play on that as well. They are some nasty people there. I'll get through it, though!

When I first moved to Mobile one of the first things I did was to register with MASS...and put my name on the "waiting list" for ADAPI was told it was a long list and that it might be some time before I could expect to be accepted. So I'm not sure what you mean by there'sno waiting list in your state.... As I've mentioned before MASS (Mobile Aids Support Services) is a JOKE. They've done nothing to assist me orfor that matter Chuck who's a life long resident of Alabama. They call him every three years to update his file and then promptly forget abouthim until they need to update their files again...

I maintain a residence in Mississippi and I still get my med's from the health dept there (ADAP)...So I don't know what to suggest... I understand there is an organization here in Mobile called A.Q.U.A. perhaps they might be of assistance...PM me and I'll give you the informationI have.... Good luck buddy

You can contact the ADAP administrator of Alabama in Montgomery, and she'll tell you there is no longer a waiting list in Alabama because of Medicare part D. Many ADAP recipients qualified for Medicare part D, so they no longer get meds from the ADAP program. There is an ADAP "surplus", for the first time in a long while. The Alabama ADAP program is among the worst, so this is great news for people who were on the waiting list. Check out this link; it's very up to date:

Well, y'all, I told you I'd keep you updated on the latest concerning my meds, and my aso's decision to take me off of ADAP, so here's the latest:

The pharmacy my clinic referred me to (1800medexpress.com) told me they would still have to charge me almost $400 a month for my meds. She tried to make it sound good, like I'd be paying more if I went to Wal-Mart pharmacy, for example. She may be right but it might as well be $3000 a month because I just don't have it.

I make way less than $1000 a month, and I just paid bills, and I'm broke. That's with ADAP. In April I will be off of ADAP and I'll have to get my meds another way. I guess the next step is each drug company's patient assistance program. I take Norvir, Invirase and Truvada. If that doesn't pan out, I'll drop my insurance or enroll in a clinical trial if I can. Wish me luck.

Sam in 'bamap.s. this proves that people fall through the cracks! I can't be the only one!

Sam, just promise all of us that you will keep an eye on the amount of drugs you have in hand? We won't want to hear that due to this gitch and that glitch you ended up off meds for even a day. Sorry, again, that you are having to throw all the balls up in the air and try to catch them all. Win

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Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems. The last was published in December 2006. He has a work-in-progress underway titled Starting Positions.

Unfortunately Sam your story is becoming the norm instead of the exception. The crack you speak of has become a chasm with more and more HIV infected people falling in. I hope all of us who have to use ADAP for our survival realize that. It can, and I am afraid will happen to many, many more. I wish I could offer you solutions instead of words.

I wrote a couple of months ago to tell you all I was to lose my ADAP coverage. I told you I would keep you posted, so here goes:

I appealed to the head of ADAP in Alabama, and faxed her quotes from different online and traditional pharmacies. I made a chart showing what my insurance wouldn't pay (over $400 a month). After reviewing my appeal, and looking at my income, they have decided I STILL QUALIFY FOR ADAP!

I will need to re-qualify in September, but hopefully the process will be the same as it was this time, i.e. showing them in black and white that I can't afford my meds without ADAP.

Another plus: I can keep my insurance. If I had not re-qualified for ADAP I would have had to cancel my health insurance and reapply.

Thanks to all of you for your support and advise; I really appreciate it!

Hey Sam, that's good news. The ladies I have spoken with at the ADAP office have been very nice and helpful.

The problem us Medicare Part D recipients are having now is this: The Alabama ADAP has an agreement with Sierra Rx; for those of us with too much income to qualify for "extra help" from Soc Sec in paying for Part D Premiums, the State offers a MECAP program (Med Part D Client Assistance Program) that is SUPPOSED to pay our monthly premiums ($125 a month) and the co-pays on HIV meds. Now, the Part D provider (Sierra) keeps slamming us with notices that we are being dis-enrolled due to non-payment, even though the ADAP office SWEARS the invoices were paid. My significant other was disenrolled last week, and is struggling to get his meds now. They are being great about offering ADAP meds for his HIV drugs....the problem is all the OTHER meds he has to take, anti-seizure meds, pain management, anti-depressant, etc. The ADAP office tells us that Sierra has disenrolled people in many states, even those not on MEDCAP programs. Sierra added several states in '07, and they may have bitten off more than they can chew.

Anyway, Sam I'm glad you still will be on the ADAP roll, and keep your fingers crossed that I don't get disenrolled and will be able to get my meds. Things are not so rosy here in the great state of Alabama!

hugs,Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Sam, Count yourself lucky... 915 people at present are on a waiting list for ADAP in Alabama... sounds bad but, California has 18,275 on an ADAP waiting list, New York list is 12,686 and even Florida their waiting list is 8,682... these are not people enrolled but, waiting for assistance from the government... there are also stipulations to meeting the requirements for ADAP... generally the government wants you to be impoverished before any assistance for help... Alabama you can not make over 24,500 and receive any type of help from ADAP... I'm very fortunate... I am employed and I have excellent insurance.. even with all the co-pays...

Every American should have the same insurance policies that our Elected officials have set up for themselves in Congress... always use your VOTE for CHANGE!

Every American should have the same insurance policies that our Elected officials have set up for themselves in Congress... always use your VOTE for CHANGE!

Totally. Everyone: Near the end of Shawn Decker's latest blog entry there's a cool link which allows you to email your elected officials. You just type in your address and zip code. That link in the blog focuses on H.R. 1282 (re: Medicare supplemental coverage)

New Yorks is limited access waiting for approval... your allowed to make up to 44,000 in New York to receive help from ADAP... Floridas is limited access... these numbers change from quarter to quarter... taken as of nov 2006...sorry I did not have time to type out all info... a friend forwarded the information to me earlier this morning...

Dear Sam...Good to hear things have worked out for now but the stress of going through these procedures and worrying that the letter you don't want to open is in the mailbox is not good for HIV+ folks or anyone for that matter...Here's hoping for more permanent results of stability in your medical needs (for all Americans)

Alan dearest...I'm sorry for you and your partner in Alabama as well having so much uncertainty...Alabama and other sourthern states are really giving you guys a hard time and that sucks - Reallly it does. Keep on fighting, contact your ASO and your elected officials and battle for your much needed meds that are basically unaffordable without assistance.

Jody

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"Wake up to find out that you are the eyes of the world". "Try to discover that you are the song that the morning brings."

Sams experiance is sobering. An experience I may face someday in the future. BUT... if I hear some peeps here suggesting that maybe we in the U.S. should be on socialized medicine??? I for one wil start shooting with my god given right to bear arms, because socialized medicine is socialism. And I'll kill to stop that. (Well, not literally) but goddamn I'll fight it till I'm dead.

First it was Lis now it is you. Who is next in line to be denied benefits?

Something has to get done in order to resolve this growing situation that exists in our society.

How about universal coverage thru a single-payer system? Dump the insurers from the equation. 100%. SAVE money (insurers take 28 cents of every dollar now) on billing to be applied to covering everyone. Government becomes the payer (like Medicaid now). We have one of the most inefficient unequal "systems" of any industrialized society. USA all the way! #%$#%#%!

Your case manager should be able to provide the names of the ADAP administrators in your state. Being an activist type and serving on so many committees for the past couple of years, I have developed a relationship with California's Chief of the ADAP program. She serves on the Sonoma County Commission on AIDS, as I do and travels from Sacramento once each month for our meetings. She has fixed a couple of things for me and if you were in California, I could direct you but, I know no one in Alabama. I do recommend starting with a local clerk in either your ASO or Provider network and if that doesn't work, go to the top person you can find. These folks are paid public servants and helping you is what they do. Have the best dayMichael

Edited to add: I have not updated my Committee files since the election but you have easy access to people on the Senate Subcommittee on Health.